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Friday, December 19, 2014

"Forgetting... is a beautiful thing. When you forget, you remake yourself... For a caterpillar to become a butterfly, it must forget it was a caterpillar at all. Then it will be as if the caterpillar never was & there was only ever a butterfly. "

For some reason I'm finding it hard to review this book. It was good, I enjoyed it a lot. Robert Jackson Bennett expertly weaved together fantasy and mystery while also being a master at world building. The characters where done well and Sigrud, Shara's secretary/henchman, was amazing. The plot was compelling and I would recommend it to other fantasy and mystery lovers. However I am finding it hard to put into words why I like it. Maybe it is my brain fog getting the best of me. After reading City of Stairs I would definitely read more from this author.

I received this book from the Blogging for Books program in exchange for this review. It is available for sale in both paperback and kindle form at Amazon.

Thursday, December 18, 2014

A week ago one of my friends got pinned as a nurse (I hope that is the right terminology). Even though it was about two hours away, it was very important to me that we go and support her. This picture is the result of that trip. The right was taken before heading home and the left the next afternoon after I had started to recover.

Endo bloat or endo belly turns my invisible illness visible, only people who didn't know still wouldn't guess what my body is going through. It hurts to know that the only time I'll see myself with something akin to a baby bump is during a flare.

The keynote speaker at the ceremony was absolutely awful. He spoke of the healing powers of positive thinking. He also spoke of the healing powers of "looking your best" which to him means doing your hair, hails, and makeup, being thin, and possible getting some plastic surgery. Could positive thinking have prevented this? I think not. I did my hair and my nails and wore something nicer than what I normally wear but that didn't help either. In fact wearing dark wash jeans instead of my normal leggings made it worse since the waistband was not as accommodating.

All we did was drive two hours, then sit in a church for a while for the ceremony, then go to dinner and this was the result. I wish you could see how much pain I was in. We had to leave dinner early (before even ordering) because I was in so much pain despite my pain medication. It then took several days of near constant sleep for me to get back to my normal pain levels. Despite all of that I'm still glad we went.

Tuesday, December 9, 2014

I don't think I ever posted about the new bracelet colors I got! When I started out making bracelets I only had colors that represented my own conditions but now I'm branching out. Top to bottom, left to right: green, teal, pink, purple, blue, black, zebra, yellow, brown camo, garnet & gold, and yellow. All the colors are available with an awareness ribbon of any of the other colors.

Monday, December 1, 2014

Thanks to your generosity I have raised enough money to get my almost $500 worth of blood work! It ended up being 8 vials, and I got pretty light headed but thankfully didn't pass out. As my mother says, phase 1 is now complete!

Unfortunately unless I can raise the remaining $490 to go to my followup appointment the blood work will be for naught. It is only after we find out the results that I can hope to find treatment. You have all been so generous so far and I hate to ask for more, but maybe I could get a share on FB, twitter, or your own blog? I am still offering a paracord bracelet to anyone who donates $13 or more. If you cannot give that much but would still like a bracelet you can purchase one from my etsy shop for $7.60.

Thank you again everyone who has donated, shared, etc. my previous posts it really means the world to me!

Sunday, November 30, 2014

It has now been 6 weeks since I started drinking Soylent, I think. Time is kinda fuzzy for me but I think I did the math right. Week three I lost a whole 0.1 pound, but that was the week after Halloween and I got three bags of candy. Week four is when I first started noticing changes. My eczema has improved, especially on my problem ankle. No matter what I do I can't get it to clear up permanently. I will start a new treatment and it will clear up some but in a few weeks it will be all scaly again. During week four it was similar to what it's like when I start a new treatment. I know from when we were TTC that DHA helps my eczema so I figured that's what was happening. I also noticed a few items of clothing fitting better. That week I lost another 1.2 pounds.

Around the end of week four I was starting to tire of the taste. My knee had also improved so I didn't need it as much; I was able to go back to my normal diet for the most part. Week five I actually gained weight but I'm not sure how much. I didn't write down my before weight as MFP always tells me "you've lost x amount since your last weight in!" I guess I figured it would do that for gains too, only without the exclamation mark maybe haha.

I decided at the beginning of week six to try and change things up a bit. I mixed in 1 tablespoon of creamy peanut butter in my 18 oz of soylent/ensure. This was apparently way too much! I had to keep diluting it with more soylent and ensure because all I could taste was PB and the texture was not appetizing. I do think I will try it again, but maybe start with 1 teaspoon instead. I also messed up my knee again trying to move the TV and plug in an HDMI cable when we don't have an HDMI slot. >.<

My clothes are still fitting better and my eczema is still improved. The weather has been changing over the last three weeks, and normally during this time I break out pretty terribly on my hands. I have special gloves to wear at night that I can't take off in my sleep to keep from scratching my skin off. Other than one teeny spot below my thumb and another at the base of my ring finger my hands are completely fine! I think my ankle is smoother than it has been in recent memory. It still looks bad, but I think it's just scarred and always will.

I think it has to be more than just DHA for this big of a change. There must be something else in Soylent I was deficient in that I'm now getting enough of, and it's kept my eczema at bay. I think if nothing else this would a reason to continue drinking it. I have recommend my little sister who has worse eczema than me try it for a few weeks and see if it helps her too. I don't know if she will though.

I lost another 3.6 pounds this week (week 6), bringing it up to a total of 8.4 pounds (which is 4% of my starting weight). So even with Thanksgiving I lost all I gained last week plus some. I didn't get this to lose weight but it's certainly nice. I have to think my metabolism is happy that I am eating (or drinking) food more often throughout the day rather than forgetting to eat for hours and hours. Plus the lower carb count certainly helps! I know this can't keep going forever though, especially since I can't exercise. I am already mentally preparing to plateau.

Thursday, November 27, 2014

Being a Thursday, I've got to rep my endosisters by wearing my yellow birthday outfit complete with yellow jeans. Thursdays are awareness day where you wear yellow and use the hashtags #onthursdayswewearyellow and/or #otwwy. Usually I can't participate because I stay in my PJs and don't have any yellow ones! :D

This year I am thankful for my mom, little sister, and husband who remain as supportive and helpful as possible. I really couldn't do it without them.

I'm thankful for the support I've found in a spoonie facebook group as well as the spoonie and body positive communities on instagram. It's nice to have people who "get" you.

I'm thankful for those who participate in the Daily Deal thread on the Sims 3 forums. Because of their help I now own a much, much larger portion of the store that I would with my nonexistent budget. They have taught me the tricks for minimizing costs and maximizing sim points. They are also incredibly nice and supportive for an internet forum. It feels like they really care about each other. They will even gift people store content who are having a bad day, or it's your birthday, or just randomly. In fact yesterday I was gifted a $24 world!

But most of all, I am thankful for those who have donated to my gofundme campaign. I can't express how thankful I am. Because of these donations I now have enough to get my blood work done, which I plan to do next week. I posted before about how hopeless I felt but now I have a little hope. As you can see, I am now over halfway to my goal! I can do the blood work now and the rest (if we get it) will be so I can go to a followup appointment and find out the results of said blood work. I don't have the words to say how thankful I am.

Saturday, November 15, 2014

After posting my rant the other day it seems two of you have donated $50 each! Thank you sooo much! I would thank you personally, but you were both anonymous so I can't. It really did help lift my spirits a bit knowing that a) anyone even reads this still and b) care enough that they would donate that much. I have a little bit of faith that maybe, just maybe, I'll at least be able to raise the $477 needed for my bloodwork if not anything else. I'll still have to cancel my December 1st follow up appointment but maybe I can hope for one after the new year. I have to believe it's possible because I don't know what I will do if I don't. =/

Wednesday, November 12, 2014

I've thought a lot about whether posting this was a good idea or not, as I don't want to seem ungrateful. I am grateful, really, but I'm also sad. I finally decided this is my blog it should be a safe place for me and I just wouldn't share it on FB, Twitter, IG, etc like I normally do. I don't think anyone who follows my blog has donated so there's probably a smaller chance of someone getting offended.

I posted before that my mother made me a gofundme 23 days ago. So far four people have donated a combined total of $250. Like I said, I am incredibly grateful for this especially the person who did so anonymously! Apart from my immediate family and not being homeless these four people are the only thing I have to be thankful about this Thanksgiving. So please, I beg you, don't think I'm not grateful. I also know I don't deserve nor am I entitled to anyone else's money. But...

Earlier today my mom was checking it and saw some other campaigns and it was really disheartening. There is a 12 year old dog who raised almost $2000 for a blood transfusion in two days. There is a couple who have raised $550 for their honeymoon in five days. Those are just a couple of the many examples. It makes me feel like I am less important and worth less than an elderly dog or a honeymoon. Like people care about me so little that they won't possibly help save my life, yet there are people who will do that for a dog. Like people care about me so little they won't help drastically improve my terrible quality of life that gets worse all the time, but there are people willing to pay for a honeymoon.

I'm already clinically depressed and this just hurts. I cried a lot, took a nap, and now I'm crying again. It feels like I'm not worth saving so why am I trying so hard?

Tuesday, November 11, 2014

You may know I am a member of the From Left to Write book club and sometimes post not really review reviews based on books. Well I've now signed up for Blogging for Books and will occasionally be posting reviews for them too! These will be more traditional reviews than the FL2W ones.

"You have made us do terrible things."

"I have made you into a weapon, my dear. Weapons do terrible things. That is rather the point of them."

Silhouette takes place in Victorian London with my favorite people: the Paternoster Gang. Give these guys a spin-off and I will watch every episode! A power spike gets the Doctor's attention and they, along with Clara, try to discover who is behind that, as well as a string of murders.

This is the first Doctor Who book I've read. I still haven't seen any of season 8 so I can't comment on how well they portray Twelve's character. It seems like it's done fairly well as I can picture Peter Capaldi in my head. I didn't like Clara very much in Season 7 and I think it may be because I didn't want her to be Eleven's new love interest. I liked her a lot better in the book so I hope I will in the new season too.

Strax was excellent. He had me cracking up in nearly every scene he was in! I even found myself reaching for a highlighter to highlight his quotes. In one he says, "I have a comrade who tells me that once one has eliminated the impossible, whatever remains, however improbable, must also be eliminated." In another he says he has dehydrated water in his field kit! Dehydrated water! He was perfect. Vastra and Jenny were well done too, but I think their characters are a bit flatter than Strax even in the show.

Overall it was an easy read. It wasn't serious literature by any means, but I didn't expect it to be. Some things were predictable but there were a few surprises. Silhouette would be a wonderful book for reading by the pool, on an airplane, etc. I read most of it while waiting on doctors and that worked out well. I'm happy I chose this book and would recommend it to other Doctor Who fans.

I received this book from the Blogging for Books program in exchange for this review. It is available for sale in both paperback and kindle form at Amazon.

For a while now Dobby (the poodle mix) has needed grooming. Not for aesthetic reasons, but practical ones. He keeps bringing in wildflower seeds all over his coat that I then have to clean off. Unfortunately we don't have the money to get either dog groomed at the moment. Even if getting them groomed wasn't going to keep us from getting groceries I'd feel pretty crappy about paying for it when we're asking people for money. So a couple of months ago I got a dog grooming kit from amazon that was highly rated but not super expensive so I could attempt to do it myself. I've done it twice previously with acceptable results.

I've been putting it off for about a week now because I just don't feel good. My knee still isn't better, I'm constantly exhausted, my endo started flaring, etc. Yesterday I came to the conclusion that I couldn't keep putting it off because things weren't going to get better. His hair would be so long he'd be blind and tripping over it before I felt up to it. So I decided to suck it up and do it.

The problem is, you can't just pull out the clippers and do as much as you can, stop, and do the rest later. In order to keep the clippers from getting dull (and then buying new ones) you have to give him a bath immediately before hand and dry him with a blow dryer. If he does anything that might get "foreign particles" (aka dirt) on his fur like going outside you have to start over.

So I used up quite a few spoons doing all that. He wasn't being cooperative when it came to his feet which sucks because that's where the majority of seeds stick too. I'm sure it didn't help that he could tell I was frustrated and tired and in pain. Eventually I just... crashed. I don't know how to word it other than that. I told my husband I blue screened. I got dizzy, light headed, nauseous, the works all of a sudden. I just barely managed to call Josh on speaker phone and say "help" before things started going black. Or actually gray, because things don't usually go black when I start to pass out. I know he came and helped me to the couch but I don't really remember it.

Approximately several minutes later I was able to sit up and take Lupin's advice, eating a fun size KitKat left over from Halloween on the end table. It did help. I don't think my blood sugar was low, but it's not outside the realm of possibilities. I was definitely in a spoon deficit the rest of the day. Poor Dobby looks all mangy from being half groomed but I'm not even going to try and fix it for a while. Now I'm back in bed for who even knows how long. Whenever I wash the dogs I wear my swim suit so I don't worry about getting my clothes wet, and I'm still in it now. Eventually maybe I'll put on pajamas instead...

Sunday, November 2, 2014

I mentioned Soylent briefly back in May or June after we ordered it, and it just got here a few weeks ago! Yes, they were back ordered a lot and still are. If you order now it's supposed to take 2-3 months to ship but re-orders are only supposed to take 1-2 weeks. I haven't tested that yet to see how accurate it is.

But anyway, I'm sure you're wondering what Soylent is and why I would want to drink people. From their website:

Soylent™ was developed from a need for a simpler food source. Creator Robert Rhinehart and team developed Soylent after recognizing the disproportionate amount of time and money they spent creating nutritionally complete meals.

Soylent is a food product (classified as a food, not a supplement, by the FDA) designed for use as a staple meal by all adults. Each serving of Soylent provides maximum nutrition with minimum effort.

The reason I am interested is because with my health it is hard to get the nutrition I need. Basically I eat like crap. Most days (almost all) I don't feel up to doing any actual cooking so stick to things that merely require heating, like canned soup or popcorn. On the occasional day I do feel up to cooking I can't use fresh ingredients instead being stuck with canned or frozen. If I were to go grocery shopping in order to get fresh things I would no longer have the spoons to cook! On good days I eat a lot of carbs and processed food, and bad days are even worse. I know when you eat better you feel better, but I'm stuck in a catch 22: I can't eat better in an attempt to feel better unless I already feel better. Plus I know a lot of my problems simply will not be solved by dietary choices anyway. In short this is much better nutritionally than I already eat and also less work, without being crazy expensive ($9-12 a day depending on type of order).

There are a lot of nutritional drinks out there, what makes this one better? Several months ago I started keeping around some store brand Ensure, and it's the nutritional drink I have the most experience with. Soylent has at least 100% DV of the micronutrients you need, with only a few going higher than that - the most 171%. If you were to drink 2000 calories of the store brand ensure, you would get a wide range of micronutrients from 64-480% DV! Soylent has a 50/30/20 carb/fat/protein ratio while the store brand ensure is more like 72/10/16 (I know that doesn't equal 100, I rounded down). Carbs are a problem for me with PCOS so if there is an easy way to eat less of them I'll take it. Soylent only has 6g of sugar per day with 27g fiber whereas ensure has 176g sugar and 0g fiber! Plus soylent is dairy free and the ensure is not. I haven't done all the math for other nutritional drinks but at a glance none of them have been as nutritionally complete as soylent. The only issue nutritionally is sodium as it doesn't have quite enough, but it's fixed by just adding some table salt when you mix it.

Okay now that the introduction (that I meant to post about separately months ago) is over let's talk about my experiences. After I got it I made the pitcher seen above out of one pouch and one oil blend as directed. If you eat nothing else this pitcher would be one day's worth of nutrition. My first impression was mixed. The taste was not bad at all but the grainy texture was quite problematic. I will warn you though I am quite a picky eater and have texture issues with other foods as well. I read online that if you let the powder blend "soak" overnight, add some salt, and don't add the oil blend until it's soaked the texture is better. There was nothing I could do about the oil blend at that point but I added the salt and didn't have any more until it had soaked.

The texture definitely improved the next day, but it was still off-putting enough that I couldn't see drinking quite a bit of it on a regular basis. I added some of the ensure I keep around to my cup of soylent and the texture improved tremendously. So I took out a blender bottle and added one carton (8oz) of ensure to 8oz of soylent and shook it up, which was definitely drinkable. For reference that is 494 calories. For that first pitcher I had one blender bottle a day for a few days, with some family and friends trying some as well. I ended up pouring out some of the pitcher as it says it's only supposed to sit for a few days and I wasn't sure I'd know if it started to go bad. From then on I only made half a pitcher at a time.

With the next (half) pitcher I upped it to 10oz soylent/8oz ensure, and either I could have done that the whole time or I had acclimated to the texture a bit as that was fine as well. For reference that is 555 calories. I had between 1-1 1/2 bottles a day for the rest of the week. It seems satiating enough and I didn't feel exceptionally hungry, but I don't get normal hunger cues anyway so YMMV. I didn't really notice any changes in, well, anything that week but I wasn't really drinking that much either. At the end of the week I weighed myself and lost 0.8 pounds, anything less than a pound I generally believe to be within the margin of error and not a real loss/gain unless it is sustained.

Around the end of the first week I injured my knee which I wrote about before. Unfortunately it still isn't better more than a week later. This was, however, a perfect test for soylent! Something like this is really needed when I'm even less mobile and have even fewer spoons than normal. I stayed at the 10/8oz ratio for a few days, then went up to 12/8oz (as much as my blender bottle will hold and 615 calories), then went back down to 10/8oz. The 12/8oz was perfectly drinkable and I didn't notice much difference so that's not why I went back down. Store brand ensure is actually cheaper than soylent at $8/day and with my recent healthcare costs that we can't afford I figured this was a good compromise between nutrition and cost. I was drinking about two bottles a day and thus getting about 2/3 of my calories from the blend, with one meal or a few snacks of solid food. I did notice a small digestive change but it's kinda TMI and not a big deal.

I weighed myself yesterday and lost another 2.7 pounds. That's not much, but with my PCOS, thyroid issues, lack of mobility, etc any loss is a big deal. It also means that my previous 0.8 pound loss probably wasn't a margin of error thing as I've actually lost 3.5 pounds in the last two weeks. I think there are a few things that could explain this:

It's just water weight/bloat. Maybe I'm ingesting less salt (even though I am adding the recommended amount to my soylent now), or ingesting less gluten as I know gluten can affect endo bloat. The mix I've been drinking is mostly gluten free with some cross contamination as far as I can tell. I don't feel like I have a gluten allergy/insensitivity but it could still affect weight.

I'm definitely eating less carbs, and it is well known carbs affect weight when you have PCOS.

Because I've been stuck in bed/on the couch for a week I'm not snacking as much and thus not eating as many calories.

Chances are it's a combination of all three. Let's give it a few more weeks before celebrating to see if it goes back up, as historically it almost always has. Plus I know it's bad but I'm going to get some half-price Halloween candy today. =P Other than the weight loss and the small digestive thing I haven't noticed any changes. I don't feel any better or worse that I can tell. My clothes don't seem to fit any different. I'm not sleeping better or worse.

It definitely passed my test as a spoonie solution as long as you have something to cut it with. I feel like I could drink 2/3 soylent to 1/3 ensure now without any texture problems as long as I had some water to drink afterwards. I think eventually I could get so used to it I could drink it straight. It has been sooo incredibly convenient to have when stuck in bed. Unlike previous times I haven't sat here starving because I didn't have the spoons to make any food and no one else was around/awake to help me. So in that case it has met my expectations. I plan to keep some around and would recommend it to others with chronic health problems that keep them from eating the way they might like.

Monday, October 27, 2014

I didn't exactly take an arrow to the knee, but something happened. The other day I was sitting at the computer with one leg tucked under the other, when it happened as I was trying to straighten it back out. It hurt, a lot. Sometimes joints pop for one reason or another and it's no big deal, but this was not one of those times.

Since then I've been stuck in bed or on the couch with my foot up. I can't remember spending this much time in bed since the lupron wore off. Today it was starting to feel a bit better as long as I didn't move it or put any weight on it. It hurt for a little while after moving but for the most part I was fine as long as I stayed still.

I say was because it popped again as I sat down after going to the kitchen. I'm not sure it hurts as much as that first day, but definitely more than the last two days. It's so unbelievably frustrating! It's not like I'm terribly mobile to begin with. And what really sucks is knowing I can't even go to the doctor about it because we don't have the money. Every time I feel like I'm making headway emotionally, with my depression, something else happens. I don't even feel like it's one step forward two steps back anymore. I attempt to take a step forward and life cuts that foot off for being presumptuous. There are only so many feet you can lose before you can't even try anymore. I'm not an octopus.

Tuesday, October 21, 2014

Today is Jesse's second Angelversary. For a while now I've been seeing pregnancy tests in my timehop since I took the pictures with my phone. Boy is that hard, but I don't have the strength to delete them. This morning I watched my niece for a few hours and she was pretty fussy. On one hand it was distracting but on the other it just hurt. Still I think this year has been easier than the last. My husband got me some root beer and Little Debbie brownies and that has definitely helped! After my mom took my niece I took a nap and just woke up a little while ago. I plan to take it easy the rest of the night and cuddle my puppies close. I may not have cried as much as last year, but grief is still exhausting.

The 15th of course was the Wave of Light. We went to the ceremony put on by the same group as last year, only this time it was in a church instead of a park. It was nice because we could sit down, which is helpful when you are so emotional.

I got this shirt from I Am A Mother To An Angel, they have a website but I saw it advertised on their Facebook page. It's a little big because when I ordered it they didn't have women's sizes yet just men's/unisex. The words on the pink side of the heart are from a poem called This Hole by Lacey Harris-Willoby. I love it and I plan to wear it often even when it's not October anymore. You can still buy it but only for the next six days. I also had on my awareness ribbon paracord bracelet with colors for endo and PCOS.

I was glad this year we had a name for them to call out when it was our turn to light our candle. Last year it was just "Baby Lastname". I know it probably seems weird to name your baby over a year after they died but I'm happy we did. I just wish we had decided to do it sooner!

The image I posted on the 11th about the Wave of Light I also posted in a Sims 3 forum I frequent. (The picture was taken in the Sims 3 with my simself and simhusband if you couldn't tell.) I was a bit worried about bringing in such a heavy topic but everyone was really supportive! Other angelmoms spoke about their own losses, or the losses of friends and family. Most had never heard of the event but pledged to light their own candles. I am happy I could help raise awareness for something so important to me. I kept an eye on the instagram hashtag #waveoflight and there were so many more pictures this year than last. Almost 11,000 all together! I can't wait to see how many more there will be next year.

This is off-topic but I didn't want to make a separate post just for this. I found out the blood work my doctor ordered will be almost $500. That means with the injections and sleep study that visit will have cost us $1300, $1100 more than expected. This doesn't even include my follow up visit tentatively scheduled for the first of December or any subsequent tests and medications once he gets the results of these. We simply cannot afford it so at this time I won't be getting any blood work and will probably cancel my follow up appointment. I was hoping for answers and treatment but have resigned myself to constant pain and lack of sleep. My mother set up a gofundme campaign for me but so far it hasn't raised any money. I will post about it if a miracle happens and we somehow get the money.

Monday, October 20, 2014

So I know I'm super duper late with this post, but I finally feel up to writing it! And I have at least two more blog posts in my head I need to find time to do after this... I still haven't finished the book, but I feel like I've read enough to post about it.

The Goddess of Small Victories is about Kurt Gödel, a famous mathematical logician and philosopher, as seen through the eyes of his wife Adele. The story starts in 1980 with Adele in a nursing home, reluctantly opening up to Anna who was sent to befriend her by some historians who want access to her husband's archives. From then on every other chapter is told from Anna's perspective, and the others from Adele's point of view as she meets and falls in love with Kurt in the 1930's.

One thing that is mentioned often enough is that Kurt and Adele have no live children, Adele having miscarried their only child not long after they were married. This obviously struck a chord with me as I can see myself in a similar position. I doubt one day historians will be as interested in the life of my husband (not that I think he's boring or anything) but it's very possible we could remain childless throughout our lives. It's something that hurts to think about, especially this time of year.

I have a few friends who are childfree by choice. When people find out they don't want children they get questions like: "But who will take care of you when you're old?" I know for them it can be as annoying as people asking infertiles why they don't just adopt! Even if you have live children, there is no guarantee they will look after you in your old age. Even if they pay for your care they might not visit often. Without kids there are still options, like nieces and nephews, godchildren, family friends, but it is still something that I think about.

Wanting children for me isn't just about having a cute baby to dress up and cuddle. It is about a lifetime of interactions. Being with them in their first moments of life until the last moments of mine. A childless life isn't inherently worse or better than one with children, it just depends on your personal wants and desires. Adele doesn't seem to mourn the absence of children the way I would. I can't even comprehend how much I would lose out on by not having children in one way or another. Reading about someone without children at the end of her life reminds me that this dream is still worth fighting for.

Wednesday, October 15, 2014

I don't know if I've mentioned it here for not, but for a while now I've been dealing with flu-like body aches. At first I figured it was due to hypothyroidism, and it might have been or still could be. Last time they checked my thyroid my levels were fine and I've been on meds for that quite a while now, but I haven't seen any improvement. Other symptoms (like chills) seem to be better. Along with that I've been having an awful time sleeping because it hurts. It feels like my whole body is bruised, and it gets worse the longer I put pressure on it. So I toss and turn a lot trying to find a way to sleep that hurts the least. I never feel rested when I wake up and am often quite stiff. I also keep having these sensations where it feels like I've walked through a spider web or there is a bug crawling on me.

I went to see my primary doctor about it and they ran a few tests, one I know for lupus, but they came back fine. I was told they didn't know what was causing it and to see a specialist. My first appointment with the rheumatologist was yesterday. I was told it would be $200 which is a lot but it's important. I walk in and literally everyone else in the waiting room was at least twice my age, which always makes me feel good about myself. I'm tired of hearing "you're too young for __!"

The receptionist, nurse, and doctor were all nice though. The doctor seemed to take me seriously. I'm always afraid of being treated like it's all in my head, I'm a hypochondriac, I'm a drug seeker, etc. He asked a lot of questions and pushed on a bunch of body parts, most of which hurt. Then it became a game of "which is better, this or that" like when they show you the films at the eye doctor.

I have no idea what he suspects is going on but they gave me two injections, one on each side of my bum. I'm supposed to keep track of whether they are helping and if so how much and how long it lasts. So far I don't know because the injection sites hurt quite a bit. I think my back doesn't hurt as much, but it could be a case of my brain focusing on the new pain, you know? Body aches seem to be just as bad. The injections didn't hurt nearly as much as lupron thankfully but I couldn't sleep on either side or back and it hurts to sit too. I think I'd be okay if it was only on one side or the other. I was also given an ultrasound and I have to do a sleep study Thursday night.

I really appreciate being taken seriously; I cannot stress that enough. I'm glad he wants to be thorough. I'm not glad I finished my visit to find out it cost $800. Eight hundred dollars! I was expecting $200, remember, and that is a lot for us at the moment. They let me pay half but I'm sure they will want the other half before my follow up which is tentatively scheduled for the first week of December. This doesn't even include my blood work! I have to go to a lab for that. This is just not doable for us, at all. It's impossible and I'm not exaggerating. We do not have the money, we don't even have a credit card we can put it on. Since graduating and finishing his internship DH has been looking for a better job but hasn't had any luck so far. Any friends or family I'd be comfortable asking for help aren't doing much better than we are.

Plus yesterday morning I found out getting my records to send to the endo specialist in Atlanta will cost $1 per page. I don't even want to know how many pages it is, and they can't tell me until it prints. Once it prints I have to pay for it even if I don't want everything no matter how much it costs. I already knew we couldn't pay for surgery, but they will keep your records for a year. I know other people who have done fundraisers to pay for it, so once we got an estimate I was going to look into that. But I can't get the records review and estimate without any records!

So yesterday was just a bad day. Can't do anything about my endo. Can't do anything about everything else. I just hope these injections I payed so much for do help and last for a while. I feel like saying if they don't I will cry, but that's a bit disingenuous since I'm crying already. Add in the Wave of Light tonight and I'm a total mess.

Today my From Left to Write post is due for The Goddess of Small Victories by Yannick Grannec. I've read about a forth of it so far and it's really good! If I could ever sleep and feel rested enough to pay attention to a book I'd have finished it. I've only read 10 books this year because of such problems and it's so disappointing. I don't know if I'll be up to writing a post on it today. They send you the books for free because you agree to post about them on time, and if you don't hold up your end of the deal you are less likely to get books (which is completely understandable). I hate feeling so unreliable.

Saturday, October 11, 2014

For those that don't know, almost two years ago we lost our baby Jesse Quinn. I participated in the Wave of Light for the first time that year to support my friends, not knowing I would miscarry myself a week later. If you have lost a child you can light a candle in their memory. If you haven't you can light a candle in memory of the children lost by your friends and family.

Miscarriages are devastatingly common. Approximately 1 out of every 4 pregnancies will end this way, yet it's something we aren't supposed to talk about. You aren't even supposed to announce until the "safe zone" of the second trimester, so if you miscarry the rest of the world can stay ignorant. It is almost guaranteed that one of your friends or family have lost a child although you might not know about it. By lighting a candle you can show support and let them know "I am here for you" if they need a shoulder to cry on or a caring ear to listen.

Monday, September 15, 2014

I feel lucky to have grown up in this country, in this time period, with my mom. I never felt pressured to act like my gender or give it up completely. I could play with my tonka trucks and ninja turtles in a frilly Easter dress, or ride my bike in heels. I could play with barbies and my toy kitchen wearing pants and a plaid shirt. I could cut my hair or leave it long, whichever I preferred.

I spent a lot of my teenage years with teenage boys and felt like "one of the guys" without having to discard my gender and literally become one of the guys. I spent countless days alone with one or more boys, often in their bedrooms, without it impacting my reputation. And I didn't need to pretend I was also a boy to do so! When I started dating my husband he could ask me about my sexual history (or lack thereof) directly and believe me even if there had been gossip saying otherwise.

One woman in the book states that it is the wish of ever Afghan woman to have been born a man. When the biggest difference between men and women is freedom who can blame them? I too have often wished I had been born a man but for completely different reasons. So many of my health problems throughout the years have been female exclusive. If I was a man I would not have PCOS or endometriosis. I wouldn't menstruate at all, let alone as heavily and painfully as I do. My weight probably wouldn't have shot up as soon as I hit puberty and it would be easier to maintain or lose whatever weight I did gain. I wouldn't have a dildocam shoved up one of my orifices several times a year or need multiple surgeries to burn and cut off the tissue that causes terrible pain more days than not.

If becoming a bacha posh could have saved me from this I would have done it in a heartbeat, and in that way I can understand why these girls do it. Really I think, more than wanting to have been born a man, we wish being born a woman would not be so disadvantageous. More than once Afghanistan has been ruled by groups wanting to bring feminism to the middle east, and yet so little has changed. If you think about it not much time has passed since our own country has become more female friendly. I must have hope that one day things will change for them, and for me.

This post was inspired by The Underground Girls of Kabul by journalist Jenny Nordberg, who discovers a secret Afghani practice where girls are dressed and raised as boys. Join From Left to Write on September 16th as we discuss The Underground Girls of Kabul. As a member, I received a copy of the book for review purposes.

Saturday, September 6, 2014

For the most part things are going well in the colitis department. I'm back on my normal diet other than a few adjustments and have been doing okay. The other day I had my favorite Mongolian barbecue from the best place ever and was perfectly fine. Then a few days later I have steak (which was the meat in my Mongolian barbecue) and some french fries (which I've also eaten without problems) and completely relapse. Yesterday I stayed up for about 36 hours because I couldn't stay out of the bathroom long enough to fall asleep. After half a day of not eating anything at all I was finally able to sleep. This morning I had some toast and jam, something I've eaten a LOT of since I was hospitalized, and apparently even that is not good enough for my body right now. Grrrr. I suppose I will have to try a liquid diet again for a bit and see if things change.

Thursday, August 14, 2014

I know I haven't posted for a while. I actually thought about making a post explaining why a few days ago but then my colitis relapsed. This I felt was worth dusting off the blog for though. As someone who struggles with depression, and has gotten far closer to the point of suicide than anyone would want to be, Matt Walsh﻿'s post made me cry (and not in a good way). He truly doesn't get it. I'm glad he doesn't get it, but it still hurts.

I do believe that suicide is a choice. It is a selfish choice. At one point I wanted to die. I didn't want to kill myself, but I wished one of my illnesses would be fatal so that there would be an end. I knew what that would do to my family. In fact I believe thinking about that is what kept me in the wishful thinking phase rather than truly becoming suicidal because I couldn't do that to them. But at some point that changes. At some point it gets so bad you truly cannot bear it. The only thing that matters is that it ends. It is a selfish choice but one I can't judge, because the pain it causes their friends and family is no where near the pain of continuing to live. In the rare case it is, those friends and family make the same choice.

I don't know if joy and hope are the cure to depression. I think it's more likely that joy and hope are a side effect of the cure. Either way, when you are in the throes of depression you cannot hope. You cannot have joy. You can't and that's not your fault. I remember my own mother telling me I must continue to have hope, and feeling even worse because I couldn't. It's not that I didn't want to, I just couldn't. You can't go down to Walgreens and pick up a bottle of hope and a tube of joy to apply three times a day. But you know what is a cure for depression? Death. And sometimes to the person suffering any cure is better than no cure. I cannot fault them for that.

Here is a good article that made me feel better after reading both of Matt Walsh's blog posts. What did I find helpful? Having hope for me rather than expecting me to hope myself. Letting me know you believed one day I would feel better even if I could not believe it myself. Being there for me, letting me know I wasn't a burden, that you would continue to love me even if I never got better. But mostly it was antidepressants and actually seeing improvements in my health. If I was still so ill I couldn't do anything but lay in bed in agony I don't think all the support and love in the world would have mattered.

ETA: I want to clarify that since I don't know everyone's thoughts who walk this path, I cannot say it is always selfish. I am sure there are some people who believe they need to do this for a reason other than their own self interest. I am also using selfish to mean "concerned with one's own desire or well-being" in a morally neutral way, rather than a purely negative one. Being selfish is natural, and human, and okay. Also there are some instances where it may not be a choice, such as some drug overdoses or being in a mental state where you truly don't know what you're doing. I personally do not consider those suicides even though they may be classified as such.

Sunday, June 29, 2014

Around June 10th I got a migraine. I get them every once in a while so it wasn't surprising. I took my rescue medication and waited for it to pass. Unfortunately, it didn't. I can't remember if it started on Monday or Tuesday, but by Friday I knew something was wrong. Migraines are normally only one day affairs for me, and on occasions where they last two days it's because I failed to take my rescue medication quickly enough. So I called the doctor and got an appointment for Monday, June 16th.

The doctor wasn't sure why it had lasted that long but didn't seem that concerned. She gave me a shot in my hip and some new, stronger rescue medication. I got some lunch and then took a nap as the different meds had made me tired.

This is the part where things start to get a little TMI, so consider this your warning.

I woke up later in gastrointestinal distress you might say. My first thought was actually food poisoning. Then I started noticing blood. I checked the information on my new rescue medication and bloody diarrhea was listed under CALL A DOCTOR IMMEDIATELY so that's what I did. I was then told to go to the ER.

At the ER I gave a bunch of blood, a sample, and was hooked up to an IV for fluids. Later I had a CT scan. Results came in and my white blood count was crazy high. They decided to admit me and started me on IV antibiotics. I had all the symptoms of something called c diff but I was missing a distinctive smell.

They decided I needed a colonoscopy, but not in time to do it Tuesday morning so I had to wait till Wednesday. I was on IV antibiotics all that day and a liquid diet. The blood stopped at some point on Tuesday but I was still having problems. I don't even want to go into the torture that was consuming the liquid for the bowel prep. I almost wasn't able to do it and I still have Viet Nam flashbacks about it as my mom would say.

Wednesday I had the colonoscopy and they were going to release me but I still couldn't eat anything without rushing to the bathroom. My migraine also returned and has remained off and on since. The doctor was confused. I definitely had some kind of colitis and an infection but cultures say no c diff. Could be some other infection causing the colitis or could be Crohn's, "we'll know if I get better." Thursday I was able to eat a little without rushing to the bathroom immediately so they let me go home that afternoon. I started a GI soft/bland, dairy free diet and was given a week's worth of two different antibiotics. That was the 19th.

I've finished the antibiotics now but I'm not any better than when I left the hospital. Any attempt to eat "real" food has seen a return of urgency and pain. Even eating permitted foods makes me uncomfortable. I'm worried. Either my infection hasn't gone away completely, which means it is now making a come back, or the infection was only part of the problem. My follow up appointment isn't until the 7th. I just want to be better.

Monday, June 9, 2014

Saturday, June 7, 2014

Something happened to me tonight that made me think of TTC superstitions. I was wearing my white pj pants, unstained underwear, and had just gotten out of the shower when I started having breakthrough bleeding. It's also on a Saturday at 1am so I can't even call the doctor. It's not the worst possible time, but it's up there.

I remember when we were actively TTC and the superstitions we had or heard of. Wearing white underwear or taking a pregnancy test is a sure fire way to get AF. Standing on your head after you BD helps the boys swim. Buying baby or maternity items is bad luck. Sacrificing kittens to the fertility goddess is good luck. Okay, maybe not that last one, but you get the idea.

In the end I don't actually believe. When things seem to be true it's just confirmation bias. But at times like this I still find myself having little "I should have known!" moments. What about you? Are you truly superstitious, just play along for fun, or think all of it's dumb?

Wednesday, June 4, 2014

My sister's baby was born yesterday. I still haven't gone to see her and I don't really want to. My mom and little sister are really pushing me to go today before they leave the hospital and go home. Even though they live about 60 miles away (which could be over 2 hours easy in the summer traffic) she gave birth here. I know it probably looks bad that I haven't gone to see them and aren't in OMG I'm an AUNT! mode on social networks, but I honestly don't care what people in general think. My mom and little sister have a little more sway since we live together but I still don't know if I will go or not. Our grandpa's birthday is in a little over a week and I figure I'll see them at his birthday dinner anyway.

I really don't have anything against my niece. I'm sure she's a sweet and wonderful person. It's her parents I have a problem with and until she becomes a teenager they are kind of a package deal. I can't have any sort of meaningful relationship with her without also inviting them into my life. Becoming emotionally attached to her is going to cause problems for me that I can't deal with right now. I am still feeling very fragile. Being chronically ill is hard on my mind, not just my body. I don't feel as depressed as I was but I'm in no way emotionally stable. It doesn't help that our baby's due date is coming up. Right now she is this abstract idea and I'm scared that if I go and spend time with her (not just seeing her at an event) I'm going to worry about her in a way I can't handle.

I've thought a lot about writing her letters. I don't want her to think her aunt hates her. I don't want her to think she's the problem. I know that is a distinct possibility even if it couldn't be farther from the truth. So I thought maybe I could write her a letter explaining why I've distanced myself. These are my thoughts and feelings on the day you were born. This is why I couldn't come to your birthday party. This is why I didn't want you and your mom moving in with us that weekend your dad kicked you out of the house again. And then when she's older I could give them to her and maybe she'll understand but maybe she won't. I don't know. Is that dumb?

Monday, June 2, 2014

Saturday, May 31, 2014

My husband and I were talking about what would happen if Voldemort was real because we're nerds like that. He said he would join up with him if he would let him be his Dark Lord apprentice. He'd be all about eating death. I said that death would be eating me, because there is no way I would survive a war. He says, "isn't that kind of what's happening already?" Not in a mean way, but as a joke about how crappy my body is. Then a few minutes later I yawn and let out a yell. Something happened to my neck like right under my chin on the left side. Kinda feels like I pulled a muscle. According to my husband, death wanted a snack. Now I'm trying to figure out how to strap an ice pack to my face.

Wednesday, May 28, 2014

I feel like I'm in a funk right now, especially when it comes to blogging. Like I don't really want to talk about how I'm doing in specifics. I don't know why because since I started this blog having it as an outlet as been extremely helpful. I hope I come out of it soon.

I got my blood work redone last week. My thyroid has improved but my TSH is still abnormal. Last time it was 11.75 and now it is 7.5 (normal is 0.04-4 if I remember correctly). So they've increased my meds from 50mg to 75mg and will recheck in a few months. They were supposed to run a couple other things at the same time but they didn't tell me the results over the phone. I'm choosing to think that means they came back fine. =]

I've had a lot of problems lately with nausea, especially at night but increasingly all the time. Before nausea meds were on an ass needed basis but now it's pretty much everyday. I dread taking my nightly meds because that always makes it worse and night is bad already. I tried taking them in the morning but they make me too sleepy for that. Not taking DHA and niacin helps but I need them. I've also been prescribed Gatorade for the electrolytes (or coconut water but that's gross) because I've had more problems with my restless legs. Starting to drink a 12oz bottle everyday has cut down on incidents quite a bit.

A few weeks ago we decided to give something called Soylent (it's not people) a try, but it takes 10-12 weeks to ship. I plan to do a whole post on that and why we want to try it once it gets here. But one of the good things about it is I wouldn't need to take DHA, niacin, or drink Gatorade anymore because it has all those things in it. We got some of the not so healthy meal replacement shakes from the store until then. Just to sort of get used to drinking a "meal" instead of eating. They aren't really a meal though, they're only 250 calories. That's more like a snack. Anyway some days I will have one of those as breakfast, and then last night I had the bright idea to use one as my night time pre-meds snack. I have to eat before taking my night time meds or I will throw them up. It worked really well! I didn't take my niacin or DHA because I'm a terrible person, but I was able to go to sleep fine without really experiencing any nausea. This is something I will definitely continue to do.